The one thing I will never get used to is not seeing my children as often as I used to. I went from every day to a few times a month in one fell swoop. I keep my complaining to a minimum, it’s been hard for all of us. When it all collapsed, we went separate directions, no one’s situation was ideal. My problem was that I never felt right with the world once I was deprived of my nightly conversations with them.

When they were younger I would famously extend bedtime by telling extra stories or watching another show. I was complicit, if not the architect. of some serious bedtime schemes. My oldest daughter came up with her famous “asthma-scam” when she was 7. She has asthma so she would fake a raspy cough, I would get the nebulizer and give her a breathing treatment. Mom never figured it out that she was getting an extra 20 minutes with Dad on the sofa. I had something like this with all of them. I wasn’t home a lot of nights until almost bedtime so, selfish as it was, I found ways to get more. As the kids got older, the books and TV shows became nightly talks. Each kid had that one thing that they liked to discuss with me. Occasionally these talks morphed into conversations that most parents dread, but they happened so organically that it became easy. My kids talked often of their “Dad time” to their friends. We often had a yard full of neighborhood kids. I was the “cool dad”. Even as they got older my kids would tell me how much their friends liked me, that I was different than their own Dads. I was just being me. It wasn’t that difficult, I listened to them. I let them make their mistakes and I gave reasonable advice, not guilt trips. I fostered open communication and a friendly relationship without compromising my role as a father.

After the collapse, I found myself 100 miles from them. I make the trip down as often as I can but when I do it is a long, carefully planned ordeal because they are all over the place. Two here, one there, one I need to see at his or her work, etc. It sucks but it isn’t going to change anytime soon. I make the most of the time I have with them.

Saturday I got a call from my oldest, asking me when I was going to meet her new boyfriend, who she is apparently semi-living with, and my new Grand-dog Coda. a six-month-old Husky. I told her I would come down Sunday morning. I then called my youngest 2 and found that one was available and one was at a sleepover. I told him when I would pick him up. I then reached out to my oldest son to see if he was working. He was moving into his new apartment that day so he would be available. I called my oldest and informed her that her boyfriend was going to meet all of us except our youngest and my wife, who was working. Her reaction was “John is going to freak out”. I assured her it would be alright. And don’t forget to bring the Dog.

We met at the restaurant at noon. Just by meeting him in the lobby I knew that the boyfriend was exactly as nice as my daughter had described. We got a table for 5 and sat down. John and I got along great. My daughter seemed happy. I caught them smiling at each other and heard her whisper I told you you’d like him. Dinner was great, probably because the one that would have stressed everyone out was at work. I picked up the tab, despite great resistance from John and we parted ways. I would not get to meet the dog that day but I was now off with my oldest boy to see his new apartment.

When we got to the new bachelor pad I parked and told him to lead the way. I grabbed the 30 pack of Bud that was in my trunk and we went in. When we got to the top of the stairs, I handed the 30 pack to them and said “Housewarming gift. I thought of giving you food but I knew you needed this more”. They were pumped. I did my tour and I left.

I dropped the younger boy at his house, bid goodbye and began my 2 hour ride home. I turned my Spotify on and ignored my phone the entire ride. When I pulled into my driveway I opened my text messages. There were 2, one from the oldest daughter and one from my oldest son. They read, respectively.

For the last 3 weeks, I have been going into “town” for blood work at the local hospital. It’s a short 25-mile commute that’s only enhanced by its inconvenience. My doctor had told me 3 weeks ago that I was anemic, that I needed to get monthly blood work and a shot for the anemia. This wasn’t welcome news, it was towards the end last time that I started receiving these shots so these shots and I have a history. But I’m a good doobie so I went.

I had my labs done, checked into the oncology/infusion center and waited for the labs to come back. I scanned the room and evaluated the mix of sick people, bustling administrators, and nurses of all ages and *cough cough* body type. Hey, it passes the time. My bloodwork came back and yay, I was indeed anemic. But not enough for the shot. The real good news is that my BP was through the roof. I was asked to come back next week.

And I did. I was none too happy about it but I hauled myself out of a warm bed, stepped out into subzero temps and drove to the hospital. Again, I navigated the designated coughing and hacking area known as a waiting room, had my blood drawn by a humorless tech and headed over to oncology/infusion again. My lackluster mood changed instantly when Lisa opened the door and ushered me in.

The sign above the door could have said “das Gas Chamber” and I would have followed her in.

Lisa introduced herself to me, said a whole lot of things and asked a whole lot of questions but all I heard was a choir of angels ringing in my ears.
She offered me a coffee, I thought better of asking for an ice pack for a swollen area, and she was off. I took the time to compose myself.

Superman has been in a long, painful dry spell. Obama was in his first term the last time I saw a naked woman that wasn’t on my TV screen. The tight parking space I squeezed into on the way in was the most action I’ve had in years. But those years of isolation have made me numb also, and I’m rarely taken back by even the most wiley of charmers.

She came back and said that my labs weren’t done yet. I wasn’t complaining. We made small talk. Turns out she is married with two little ones. Not surprised there. She is also a former MA resident and we knew where each other was from. She was very nice and down to earth, which only complimented the fact that she was cuter than a duck wearing a hat. She took my blood pressure, it was really high again. Turning on the Super Charm, I motioned to the older, larger significantly less attractive nurse behind her and said: “have her take it and we’ll see if it goes down.” I was told to stop because of how “terrible” I am.

Alas, I still wasn’t anemic enough for the shot. But I didn’t mind this visit so much. She escorted me to the door and I remarked that she had to be about 4’11. She corrected me, her clogs were 2 inches and she was 4’10. I lamely exclaimed, “it’s a shame you’re married”. Her only answer was,

“with 2 rugrats”.

“I love kids, that doesn’t scare me off”. I was again told how terrible I was. I gladly made an appointment to come back the next week. “Ann, what’s your earliest appointment?”

I was back there this past Friday and Lisa didn’t greet me at the door. I was seated in a different area than last week. I put on my best disinterested, cool face and scanned the room. She was nowhere to be seen. And then, as I opened my book to kill some time she appeared. With a huge smile, she said, “you shaved your beard!”. Smooth as silk I replied,

“Oh, you noticed”. She’d better have I did it for her. She really seemed glad to see me and during the course of my stay she checked in on me often and I made as much small talk as I could. Wouldn’t you know that I was STILL not anemic enough and I have to go back this week?

I’m smitten. I’m GAGA. It’s also a fantasy. Even without my beard, I would have to hope she has Daddy issues and then learn what kind of cologne her father wore to even stand a chance. I’m also going nowhere with this. She is married and I would never touch a married woman out of respect for the husband. It’s guy code. It was just exciting to have an attractive woman pay any attention at all to me. There was just enough flirtation from her to make me feel alive. It also illustrated just how little it takes to turn me on. So many years of living with an ice queen and I have lost any swagger I may have had.

Superman needs some lovin’. I think it’s time to refine my lines. Get back out there. Maybe use the illness to my advantage. Something like,

“I may not be healthy, but I’m grateful!”

“I’m not going to be around in 10 years so there’s no chance of a long-term relationship”

“It’s been years, how long can it possibly take?’

“I’m Superman, I can ‘go around the world’ before you know it! And if it’s really bad I’ll just reverse time”

I want to thank those of you that read and interacted with me on my recent “you don’t look sick” series. The series started out as my take on having a condition but not allowing it to define me. I allowed it to morph into my telling that basic story that has pervaded my entire blog but in greater detail. In a sense, I told my whole story.

I reviewed the series this morning, fearful that I had painted too vague a picture and not stayed on point. All in all, I think I said what I wanted to say and stayed on point. I also read the comments and it was then that I realized that I had left something out. Considering that I read Elizabeth Kubler-Ross in High School when two of my best friends died in a fiery car crash I should have recognized that I left out Acceptance.

When I began this blog I was at a low point. The title itself, Superman can’t find a phone booth, was conceived in a hospital bed and suggests the futility of being once-powerful and now without an outlet. As my blogging journey progressed I began to come to grips with my homelessness, financial situation, relationship with my children, deteriorating marriage and place in the world. The one thing I did not embrace was the obvious-to-everyone-but-me fact that my illness was not to be ignored anymore. No amount of positive thinking, Tony Robbins podcasts or denial was going to make me better.

I speak often of the fearless, forge-ahead at all costs attitude that I was able to maintain for so many years. I still maintain that it was the right thing to do. I managed to keep my family worrying about me to a minimum and it allowed me to work for as long as I could. But, I always rejected the notion that it was denial. I joked about it when confronted with it, spinning it back on my detractors with its success rate. Hell, even my doctors begrudgingly admitted that it worked for me. But only recently, perhaps it was today when reading the comments of some bloggers who are “in the know”, it occurred to me that I have moved past the denial phase and have achieved Acceptance. This is a bittersweet step for me.

I can accept that my condition will not go away if I ignore it. But I’ve never really allowed myself to think openly and honestly at what the future holds, even though I know. Years of Dialysis, a possibility of another transplant and a hope for a cure. Without my denial, will I resign myself to this path or fight it?

I can accept that I may never work full-time again. This kills me. But my recent dabble in part-time work, albeit fun, has taken a physical toll. I don’t think it’s a matter of conditioning, my body really can’t take it. Consequently, I have to accept that 2 days of work requires two days of recovery.

I can even accept that I will likely live in my mother’s house until the day I die. It’s technically mine, she is leaving it to me, and she will outlive me anyway so I’m getting my inheritance now.

What I am having difficulty accepting is how lousy I have felt and the lack of breaks between symptomatic episodes. I have always had “flare-ups” of gout, edema, cramping and other fun little side effects of kidney disease. But they passed and I would experience a period of relatively good health. Since this past summer, it has been something almost every day. For a while, I was hopeful that I would improve, be relatively symptom-free and look to the day when I can resume some of my favorite activities; biking, hiking, weight lifting, basketball. Today, as I have spent most of the day on the sofa because my blood pressure is dangerously high, I am lightheaded and dizzy when I stand up and extremely listless and unambitious after a busy, but not that busy day yesterday. I am down, and I never, ever get down.

I don’t know if I can accept that a mere 3 years ago I was playing basketball with teenagers, yet my shoes are now collecting dust.
That I was a part of a mountain bikers group that became great friends but now my bike is sitting sadly in the corner of my garage.
That I was at the gym 4 days a week, moving weight and feeling strong. Lately dragging my ass out of bed counts as Cardio.

Fortunately, I do accept that I will never completely give up. I keep the bike and the shoes not to torture myself but as a reminder of what feeling good feels like. In the event that things turn around, or dare I hope for a medical advance of some kind(?) that these things will be at my disposal again.

I’ve never mixed hope and realism before. So far I can tolerate the taste. It’s not the same type of relationship as giving up and accepting.

As the dreary month of February grinds on I take comfort in knowing that the worst part of the New England winter will soon be over.

While I can’t wait for Spring, I pause to marvel at the subtle beauty of winter. I look out my window at the endless sea of white and it occurs to me that in what initially looks like a barren landscape life is still a bustling ecosystem.

Beneath the ice covering the duck pond, fish teem. In the barren branches of trees the industrial squirrel forages for survival. Tracks in the snow of tiny and large creatures alike prove that the forest is still alive despite the deafening silence and grey skies.

Finally, I think of what lies beneath the snow. The grass waiting to grow. The plants eager to bloom. And of course the location of the iPhone 7 that fell out of my pocket In December as I was shoveling.

This series began as a discussion of what it was like, speaking for myself only, to deal with an increasingly visible illness. It has evolved into me telling my story. I have detailed my struggle to not let my illness define me, to avoid the default greeting of “how are you feeling”? Not because I have a problem with people caring enough to ask, but because I don’t want people’s first thought when they see me is, he’s “the sick guy”.

So, to catch up, I managed to avoid the above problem for the most part through “putting on a good face”. While people knew I had something going on, they didn’t see it on me and it basically went away. My wife called it Denial, and I have to admit it may have looked like it, but in actuality, I just didn’t want to think about it. There was a positive to it, there were people that had known me for a while and were not aware of my health issues that were inspired by my attitude. What they didn’t understand is that I am just a hard-headed guy who has never seen the point of feeling bad for myself. Stay busy, stay productive and hope the sun rises tomorrow. My doctor, post-transplant, would tell me that my denial was the best thing that I ever did. I entered the surgery much fitter and stronger than the typical patient. My wife never forgave the doctor for validating the behavior she detested.

Post-transplant I almost put an end to the “how are you feeling” era. I was up walking 2 days after my surgery, not the week that was recommended. I was back at work in 33 days, not the 90 days recommended. I dropped weight and I had color in my face for the first time. I didn’t look sick. For five years I kept it up. People knew that I was feeling good.

One night in 2016 I was serving a dinner at a Masonic function. I prepared a meal for 85 people all by myself. I was in my element, the kitchen. Moving and grooving, flipping pans and slinging some grub was fun for me. While serving the main course I suddenly grew fatigued and my hands cramped into a claw, making any dexterity impossible. I needed help to finish the dinner, people grew concerned. People who didn’t know me pre-transplant, they never saw the sick me. They wanted to know what was the matter. I knew. It was back.

In 2016 I would lose 48% of function in my new kidney. I would experience symptoms that were highly visible. My cramps happened to the point that I couldn’t hide them, my legs were swollen to the point that I could barely walk. I would contract a lung infection in July that would end up hospitalizing me for the entire month. I was out of work and out of options. I applied for disability. It was finally official, I was the sick guy.

By now, the fight was gone. I had hit bottom. That’s when I began this blog. To reap the cathartic, therapeutic benefits of putting my thoughts to paper. I embraced my illness, stopped trying to hide it and find a way to share a bed with it. Now, it is all about accepting that I have a condition that needs to be controlled, embraced and placed front and center. My reward for finally doing this is I have achieved so much peace of mind. Once you are at the very bottom you have nowhere to look but up.

20 years old…” how are you feeling?”. Good
30 years old…” how are you feeling?”. Ok, why do you ask?
40 years old…” how are you feeling?”. I can’t tell you, so I’ll say great
45 years old…” how are you feeling?”. I would love to tell you, but I can’t afford to. I’m ok
52 years old…” how are you feeling””. I’m alive, thanks for asking.

There’s no escaping it anymore. Some days I feel great, other days I have an episode of crippling cramps in front of 5 old ladies while volunteering at the food pantry. Most people I know are aware that I am pursuing a disability claim. I do my best not to look sick otherwise.

The other day I posted a picture on FB of the mountains of snow we have up here for my MA friends. The first person who responded didn’t ask about the snow, instead, she typed…wait for it…

You know the story. You’re walking on the beach, you stumble on something in the sand, you look down and you see what appears to be a vase. You unearth it and instinctively know to rub it. Suddenly a wisp of smoke escapes from the uncertainly secured cap. You drop it and POOF, before you stands a Genie.

He offers you 3 wishes. There is a time limit and once a wish is made it can’t be reversed. What do you wish for?

I often toss silly situations like this around in my mind. The what-if is a harmless exercise to entertain different scenarios. Middle-aged guys often joke about harmless stuff like “if I wasn’t married I could probably shag that hot waitress at the Tilted Kilt”. In reality, unless she has “Daddy issues” and you were lucky enough to be wearing his favorite cologne he would likely be rebuffed with great prejudice. The what-if is also dangerous if you are like me and spend a lot of time dwelling on the past. The 3 wishes scenario is a fun one based purely on its implausibility. Considering that it’s already implausible, why don’t I make it more interesting by doing a then and now?

First of all, do I take care of myself first or do I think of others? 20 year old me would jump at the prospect of free wishes and would immediately think of himself and ask for a large sum of money. After all, isn’t life all about money? Cars, electronics, a big house and nice clothes make the man. Even 30 year old me would have bought into that to some degree and 40 years old me would sure want the house if nothing else.

The current me would also think of me first. I have to. Before I can help others I need to secure my own mask. But the current me is not all about money. It took losing everything that I have to take away the allure of the glimmering pile of gold. 25 years of keeping up with the Jones’, and living check to check in jobs that paid well but robbed me of my soul has taught me the concept of enough. I did enough to give the children the childhood they deserved and held on as long as I could. A bankruptcy, a foreclosure and most of my kidney function later I am embracing enough. Maintaining wealth is too much work. I want a house with lots of wood and animals lying on the many sofas with sunlight streaming in. I want a nice truck that will tow a boat and a couple of snowmobiles. Enough in the bank to not worry about money anymore, but not enough to consume me.

Once offered the second wish, the former me would request Time. Time to work, time to drink after, time to party and not need sleep. A 36 hour day. He had places to go, people to meet and booze to drink. If it was possible to wish to never need sleep, he would have wished for that.

The current me would also ask for time. Not to party, not to drink, not to work. I’ve done that. I want lost time. The time that I spent working late for ungrateful assholes that dangled the carrot of career advancement in front of my nose. The time that I spent stuck in traffic on the way home. The time that I spent on my ass with swollen legs, cramping, and fatigue, drinking beer and watching television. Instead I want all that time back in the form of bedtime stories, tossing the football in the yard, Saturday morning Soccer games, family dinners that I never made it home for. Time spent patiently listening to the rambling stories of an excited child glad to see his/her father. Time to recognize the signs that my wife was struggling and that I was losing her. If possible I want to go back in time, but that’s truly a fantasy.

Now comes the third wish. I know the younger me still had a heart for those around him. He would broadly wish for world peace. He was a good, if not misguided soul. He tried to hide it for many years but for those few that he showed his true self to, he cared.

The current me would also make a wish for the betterment of others. As my third wish I would ask for the validation of Karma, that there be a bus dedicated to it and that I get to be the driver. I would love to personally ensure that all of the good people that put such positive energy into the universe receive it back tenfold. That the kind, the generous, the selfless and the humble are rewarded. And as for the killers, the liars, the cheaters and the greedy…well that’s why the Karma bus has reverse. I need to know, if only for one day that there is some justice in the world.

It’s a nice fantasy, but I know that no matter how many times I walk on the beach barefoot there is 100% chance that I will step on a stingray or HIV infected needle before I do a bottle.

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